End-of-life resources for people with metastatic cancer and their carers

Compiled by Stephanie Sugars, pj4steph@yahoo.com

General Resources

Growth House, Inc. – free access to over 4,000 pages of high-quality education materials about end-of-life care, palliative medicine, and hospice care, including the full text of several books http://www.growthhouse.org/

National Hospice and Palliative Care Organization – Caring Connections http://www.nhpco.org/learn-about-end-life-care

Cancer.net – to help people with cancer and their families to better cope with cancer http://www.cancer.net/coping

National Cancer Institute: Coping with Cancer: Supportive and Palliative care http://www.cancer.gov/cancertopics/coping

Metastatic Breast Cancer Network – Finding Financial Assistance http://mbcnbuzz.wordpress.com/2014/01/12/finding-financial-assistance/

Palliative Care – Directories

Palliative care is an umbrella term for medical care meant to treat, rather than cure disease. One type of palliative care is hospice care – available to those with terminal illness.

International Association for Hospice and Palliative Care – Global Directory http://hospicecare.com/global-directory-of-providers-organizations/

European Association for Palliative Care http://www.eapcnet.eu/Themes/Organization/Palliativecaredirectories.aspx

Get Palliative Care – USA  http://www.getpalliativecare.org/

Palliative Doctors: Compassionate care at any stage of an illness http://www.palliativedoctors.org/

Canadian Hospice and Palliative Care Association http://www.chpca.net/family-caregivers/directory-of-services.aspx

Asia Pacific Hospice Palliative Care Network – Includes Australia and all regions of Asia http://aphn.org/in-the-region/directory-of-services/

Advance Care Planning  

Five Wishes for Adults (also forms for adolescents, young adults and children) http://www.agingwithdignity.org/

Dying Matters: raising awareness of dying, death and bereavement – UK-based, but for all http://dyingmatters.org/

PREPARE: An online, multi-step program, incorporating videos, that can help you: make medical decisions for yourself and others; talk with your doctors; get the medical care that is right for you https://www.prepareforyourcare.org/

The Conversation Project: talking about the end of life http://theconversationproject.org/

Speak Up: Start the conversation about end of life care – Canada http://www.advancecareplanning.ca/

Deathwise: A nonprofit organization passionately committed to helping people talk about, make decisions and plan for the end of their lives https://www.deathwise.org/

Groundswell Project in Australia has many online and country-wide resources http://thegroundswellproject.com

CINDEA – Canadian Integrative Network for Death Education and Alternatives http://www.cindea.ca/index.html#intro

Living Wills and Powers of Attorney for Health Care: An Overview
 http://www.nolo.com/legal-encyclopedia/living-will-power-of-attorney-29595.html

National Cancer Institute: Planning the Transition to End-of-Life Care in Advanced Cancer (PDQ®) for clinicians http://www.cancer.gov/cancertopics/pdq/supportivecare/transitiontoEOLcare/healthprofessional/page1

Hospice (see also Palliative Care Directories)

eHospice – European and US Directory http://www.ehospice.com/usa/en-gb/directory.aspx

Hospice Directory – USA  http://www.hospicedirectory.org/cm/about/state_hospice

Nursing Homes, Hospices and End-of-Life Resources http://kspope.com/hospices/index.php

Compassion & Choices – support, education and advocacy for EOL choices http://www.compassionandchoices.org/

After Death Care

To learn about home funerals and green burials/cremations

Natural Death Centre – AU – http://www.naturaldeathcentre.org.au/

National Home Funeral Alliance – USA –http://www.homefuneralalliance.org

Home Funeral Directory – USA – http://homefuneraldirectory.com/

Good Funeral Guide – UK – http://www.goodfuneralguide.co.uk/

For carers of those with metastatic cancer

Next Step in Care: Family caregivers and health care professionals working together http://www.nextstepincare.org/

National Cancer Institute: End-of-life Care for People with Cancer http://www.cancer.gov/cancertopics/factsheet/Support/end-of-life-care

Caring for the patient with cancer at home http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/dealingwithsymptomsathome/index

ManageCancer.org http://www.managecancer.org/resources.aspx

Healthy Caregiving: Creating a culture of caring http://www.healthycaregiving.com/

Caregiver Resources from RobCares http://robcares.com/caregiver-links

Grief and bereavement

Griefnet.org: Grace Happens http://www.griefnet.org/

Coping with loss by Association for Death Education and Counseling http://www.adec.org/For_the_Public.htm

Griefwalker , Stephen Jenkinson, 70 minute film and his website http://www.nfb.ca/film/griefwalker http://orphanwisdom.com/griefwalker/